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If you wonder where I’ve been, I’ve, for one thing, been blogging a bit for (very little) pay over at Forbes.com and writing a lengthy cover story for the September issue of Healthcare IT News.

The Healthcare IT News piece actually breaks down into a fairly short lead story and several sidebars, which aren’t all that evident from the traditional Web version. (The digital edition has everything.) For the sake of convenience, here are links to all elements of the cover package:

This is not related to health IT, so if that’s all you’re looking for, I won’t be offended if you skip this post—unless you’re involved in wearable sensors, in which case, there’s something near the end that may be of interest.

No, this post is about multiple system atrophy, the rare, progressive, always-fatal neurodegenerative disorder that killed my father in 2012. While my dad was fighting this evil disease, more than a few physicians he saw had either never heard of MSA or had never seen a case of it. One marked it down in the medical record as “MS,” as in multiple sclerosis, a completely different condition.

Recently, MSA awareness got a shot in the arm in the form of some bittersweet news: Las Vegas-based celebrity chef Kerry Simon, who has been called the “rock n’ roll chef” by Rolling Stone magazine and probably is best known nationally for beating Cat Cora on “Iron Chef America” in 2005, told the world he had this illness. He went public in December in an interview with his friend Robin Leach — yes, that Robin Leach.

Rather than go into seclusion as his body starts to wither away, Simon has chosen to become the public face of the disease. He just started a new organization called Fight MSA, and has a high-profile fundraisers planned Thursday in Las Vegas. Simon is friends with a lot of rock stars, and these are big-dollar events with big names, including entertainment from Sammy Hagar, Slash, Alice Cooper and Vince Neil of Motley Crue, and food by a long roster of famous chefs from around the country. If you can make it, tickets are still available.

The same night, his restaurant in his home town of Chicago, Chuck’s: A Kerry Simon Kitchen, is holding a smaller benefit. It just so happens that I’m returning from the HIMSS conference in Orlando, Fla., that evening, flying into Midway Airport. Chuck’s is at 224 N. Michigan Ave., in the Hard Rock Hotel, which is right on the way home for me from Midway. If all goes well, I plan on being there around 8 pm, and I invite you to join me. Unlike the $500/$1,000 Vegas event, the Chicago fundraiser will only set you back the cost of a hamburger or a cocktail.

(If you happen to find yourself at one of Simon’s restaurants in Las Vegas, Chicago, Los Angeles, Atlantic City, N.J., or Punta Cana, Dominican Republic, please put in a good word about his fight against MSA.)

I’ve been trying to sell this story to national and local mainstream and foodie media, so far, to no avail, so I’m posting it here. If you have any leads for me, please let me know.

Also on the MSA front, perhaps the foremost researcher of this disease in the world, Dr. Gregor Wenning of the Medical University of Innbruck, Austria, last year published the first medical textbook dedicated to understanding MSA. Wenning just flew 18 hours each way to meet with Simon. If you’re a neurologist or other physician treating MSA patients, you can buy a copy here.

Just last week, the U.S. Food and Drug Administration approved a drug called Northera (droxidopa) for treatment of neurogenic orthostatic hypotension (NOH), a sudden drop in blood pressure when standing up that occasionally is a symptom of MSA, Parkinson’s disease, pure autonomic failure and even diabetic neuropathy. My dad had at least a couple of fainting spells due to NOH.

This summer, I am planning a huge undertaking to raise awareness this summer, a bike tour from Chicago to Washington, D.C. My dad lived in the area, and there just happens to be an MSA-related conference there in July that I may use as my finish line. That’s 800 miles, for those of you keeping score at home, and I think I can do it in less than two weeks. There may be an opportunity to ride a segment or two with me as well, particularly the final leg through Maryland. I expect to have some details to announce during March, which happens to be MSA Awareness Month.

I will be putting up a separate blog soon to share details of my tour and, hopefully, updates en route. (You know, quantified self folks, I might be able to make use of some of your technology if I’m going to be on a bike for 6-8 hours a day for 10-14 days. Just saying.)

I’m about to escape the frigid winter blast in Chicago, a.k.a., Chiberia, for the relative warmth of Las Vegas (it will be below 40 degrees Fahrenheit at night, so it’s not exactly tropical there either) and the Digital Health Summit at International CES. On Wednesday afternoon at 4:10 p.m. PST, I will be moderating a panel called “Loudmouth Patients: Making Noise and Making Change.” Panelists will include: well-known empowered patient — and pain in Medtronic’s behind — Hugo Campos; Donna Cryer, CEO of the Global Liver Institute (and a liver transplant recipient herself); and Greg Matthews, group director of interactive and social media at WCG.

I’m giving just a short intro since the session is only 30 minutes long, though I do intend to give a condensed version of the story of how I had to raise my voice in support of my dad, who was rendered unable to speak by a rare disease as he was dying — and being badly mistreated — in an ill-equipped and poorly run hospital less than two years ago.

Hopefully soon we can all speak up to our healthcare providers without being blacklisted like Seinfeld’s Elaine back in the 1990s (h/t Brian Ahier).

Speaking of patients getting a look at their medical records, I’m also working on a story for U.S, News & World Report about the pros and cons of the OpenNotes project. Stay tuned for that one hopefully later this month.

As regular readers might already know, 2012 was a transformative year in my life, and mostly not in a good way. I ended the year on a high note, taking a character-building six-day, 400-mile bike tour through the mountains, desert and coastline of Southern California that brought rain, mud, cold, more climbing than my poor legs could ever hope to endure in the Midwest, some harrowing descents and even a hail storm. But the final leg from Oceanside to San Diego felt triumphant, like I was cruising down the Champs-Élysées during the last stage of the Tour de France, save the stop at the original Rubio’s fish taco stand about five miles from the finish.

But the months before that were difficult. My grandmother passed away at the end of November at the ripe old age of 93, but at least she lived a long, full life and got to see all of her grandchildren grow up. The worst part of 2012 was in April and May, when my father endured needless suffering in a poorly run hospital during his last month of life as he lost his courageous but futile battle with an insidious neurodegenerative disorder called multiple system atrophy, or MSA. (On a personal note, March is MSA Awareness Month, and I am raising funds for the newly renamed Multiple System Atrophy Coalition.)

That ordeal changed my whole perspective, as you may have noticed in my writing since then. No longer do I care about the financial machinations of healthcare such as electronic transactions, revenue-cycle management, the new HIPAA omnibus rule or reasons why healthcare facilities aren’t ready to switch to ICD-10 coding. Nor am I much interested in those who believe it’s more worthwhile to take the Medicare penalties starting in 2015 for not achieving “meaningful use” than to put the time and money into adopting electronic health records. I’m not interested in lists of “best hospitals” or “best doctors” based solely on reputation. I am sick of the excuses for why healthcare can’t fix its broken processes.

And don’t get me started on those opposed to reform because they somehow believe that the U.S. has the “best healthcare in the world.” We don’t. We simply have the most expensive, least efficient healthcare in the world, and it’s really dangerous in many cases.

No, I am dedicated to bringing news about efforts to improve patient safety and reduce medical errors. Yes, we need to bring costs down and increase access to care, too, but we can make a big dent on those fronts by creating incentives to do the right thing instead of doing the easy thing. Accountable care and bundled payments seem like they’re steps in the right direction, though the jury remains out. All the recent questioning about whether meaningful use has had its intended effect and even whether current EHR systems are safe also makes me optimistic that people are starting to care about quality.

Keep that in mind as you pitch me for the upcoming HIMSS conference. Also keep in mind that I have two distinct audiences: CIOs read InformationWeek Healthcare, while a broad mix of innovators, consultants and healthcare and IT professionals keep up with my work at MobiHealthNews. For the latter, I’m interested in mobile tools for doctors and on the consumerization of health IT.

I’m not doing a whole lot of feature writing at the moment, so I’d like to see and hear things I can relate in a 500-word story. Contract wins don’t really interest me since there are far too many of them to report on. Mergers and acquisitions as well as venture investments matter to MobiHealthNews but not so much to InformationWeek. And remember, I see through the hype. I want substance. Policy insights are good. Case studies are better, as long as we’re talking about quality and safety. Think care coordination and health information exchange for example, but not necessarily the technical workings behind the scenes.

And, as always, I tend to find a lot more interesting things happening in the educational sessions than in that zoo known as the exhibit hall. I’m there for the conference, not the “show.”

Many of you already have sent your pitches. I expect to get to them no later than this weekend, and I’ll respond in the order I’ve received them. Thank you kindly for your patience.

I encountered the disturbing closed-door culture of American medicine on my very first day as a student at one of Harvard Medical School’s prestigious affiliated teaching hospitals. Wearing a new white medical coat that was still creased from its packaging, I walked the halls marveling at the portraits of doctors past and present. On rounds that day, members of my resident team repeatedly referred to one well-known surgeon as “Dr. Hodad.” I hadn’t heard of a surgeon by that name. Finally, I inquired. “Hodad,” it turned out, was a nickname. A fellow student whispered: “It stands for Hands of Death and Destruction.”

Makary went into a discussion of checklists, à la Gawande, and reporting of adverse events. “Nothing makes hospitals shape up more quickly than this kind of public reporting,” he said. Yep, a little shaming can be good for consumers. And shocking.

Now playing in a fairly small number of theaters and available on DVD, on demand and through iTunes is a new movie called “Escape Fire,” which takes its title from the Don Berwick book of the same name. I have not been to see it yet — soon — but the trailer is compelling. So is this graphic, which the movie’s producers are circulating on social media:

Still think we don’t have a problem with patient safety in this country? Not only haven’t you been paying attention, you also haven’t heard Dr. Farzad Mostashari tell the heart-wrenching story of accompanying his mother to an emergency department shortly after he joined the Office of the National Coordinator for Health Information Technology in 2009.

He couldn’t get answers about his mother’s condition from anywhere in the department, and not because the doctors and nurses didn’t want to do the right thing. “The systems are failing them,” Mostashari said Wednesday at the College of Healthcare Information Management Executives (CHIME) CIO Forum, where I am now.

Even as a physician, he felt like he would be imposing on the doctors and nurses on duty if he requested to look at his mother’s paper medical record to see what might be wrong. “There was something rude about trying to save my mom’s life by asking to see the chart. That’s messed up,” Mostashari said.

Yes, yes it is. And Mostashari later told me he shared that story for me, because I had told him right before he went on stage about the suffering my dad needlessly suffered in a poorly managed hospital in my dad’s last month of life. Journalists don’t often say this, but thank you, Farzad.

As it turns out, the CIO of the health system that owns the hospital that mistreated my dad is here. I introduced myself and gave a brief synopsis of what happened, in a non-confrontational way. I intend to follow up. The hurt of losing my dad is still fresh, but I feel inspired by the media soapbox I have.

I want to honor my dad’s legacy in a positive way. I want to help this hospital fix its terrible processes and toxic culture so others won’t have to suffer the way he did.

Friday there was a lot of talk of healthcare reform. One interesting — and plausible — idea I heard for the first time is that the new Medicare policy of denying reimbursements for preventable readmissions within 30 days of discharge for patients with heart attack, heart failure or pneumonia might have an unintended consequence: We’ll start seeing a lot of readmissions on or after Day 31.

The new policy is one of the many aspects of true reform in the Patient Protection and Affordable Care Act beyond the controversial insurance expansion. And there seems to be a loophole that you can be sure a lot of hospitals will seek to exploit. Even if they don’t, it is hard to change patient behavior, so it’s likely many will come back to the hospital for the same condition, even if it’s not within 30 days.

More importantly, I heard some statistics presented by Stanford dermatology resident Michelle Longmire, M.D., about medical errors: 7o percent of all sentinel events in U.S. healthcare facilities — and there were 8,859 such events voluntarily reported to the Joint Commission between 1995 and the first quarter of 2012, meaning that many times more probably occurred —result from breakdowns in communication. Half occur during patient handoffs such as shift changes, specialist consultations and transfers to other wards or facilities, Longmire said.

This happens far too often, yet some politicians who want to repeal “Obamacare” keep trying to convince the ignorant masses that American healthcare is just in need of a few tweaks.

At the Republican National Convention in August, New Jersey Gov. Chris Christie said the following: “”Mitt Romney will tell us the hard truths we need to hear to end the debacle of putting the world’s greatest healthcare system in the hands of federal bureaucrats and putting those bureaucrats between an American citizen and her doctor.” PolitiFact.com generously rated this as “half true.” However, PolitFact itself noted that the World Health Organization rated U.S. healthcare as 37th of 191 countries in terms of “overall performance.” The Organization for Economic Cooperation and Development says we spend more on healthcare as a share of gross domestic product than any of the other 33 OECD countries. If that’s the “world’s greatest,” I’d sure hate to be worst.

Last week, during the first presidential debate, former Massachusetts Gov. Mitt Romney, the very same Gov. Romney who championed near-universal health insurance coverage with an individual mandate in his home state — a plan first hatched by the conservative Heritage Foundation as an alternative to the Clinton healthcare reform proposal in 1993 — said this:

Look, the right course for — for America’s government — we were talking about the role of government — is not to become the economic player picking winners and losers, telling people what kind of health treatment they can receive, taking over the healthcare system that — that has existed in this country for — for a long, long time and has produced the best health records in the world.

Without getting into what the role of government should or should not do, our health records suck, Our record on producing healthier people is not so wonderful, either. So no matter what Romney meant by “best health records in the world,” he was lying.

I couldn’t help thinking he was playing to this crowd:

Now, this cartoon makes it seem like Obamacare is so wonderful. It’s not. As I’ve said before, having insurance does not mean you will get good care. Having “good” insurance that requires very little out-of-pocket for the patient doesn’t guarantee good care, either, nor does being a VIP. Recall the case of James Tyree, who died from a medical error at a prestigious teaching hospital he was on the board of. The late Rep. John Murtha (D-Pa.) suffered a similar fate despite having “Cadillac” insurance coverage.

Did you happen to catch my story in MobiHealthNews on Thursday about Carrie Handley, the IT consultant-turned-cancer patient? She got frustrated with first a misdiagnosis and then the hassle of lugging around a binder full of paper records that she had to go to multiple sites to collect to assure continuity of care during her treatment and surgeries. So Handley digitized all her records.

Initially, she transported the information on a USB drive, but that got lost in a doctor’s lab coat. Then, her son brought over an iPad. The tablet provided the right balance of portability and shareability. In this interview, Handley, a resident of Waterloo, Ontario (you know, the home of BlackBerry maker Research in Motion), describes the process and shares her thoughts in general on mobility in healthcare.

We wouldn’t have connected if she hadn’t read my tribute to my dad last month. After reading Handley’s story in the e-mail she sent me, I knew we had to do this podcast to help spread the idea that communication can help foster the kind of patient-centric care that eluded my dad, that initially eluded her and that probably eludes millions of people every year.

This Sunday is Father’s Day. I miss my dad terribly. But I take comfort in knowing that I’m doing a small part to raise awareness of multiple system atrophy (MSA) — the rare neurodegenerative disease that killed him — and perhaps advancing the cause of patient safety ever so slightly.

The group now has 661 members. There really should be 1,000 times as many. Please join and share your own stories, then help get the word out about the poor state of U.S. hospital care. (Note that I only accept Facebook friend requests from people I know personally.)

Since you’re here primarily for health IT, I’ll point you to a couple of relevant items that Sidorov summarizes. In a post actually written back in February, Martin Gaynor, chairman of the Health Care Cost Institute, discusses the organization on the Wing of Zock (the name is explained here) blog. The institute is aggregating claims information from the likes of Aetna, Humana, Kaiser Permanente, UnitedHealthcare and CMS to provide researchers with rich data sets related to healthcare costs and utilization.

“At its most basic, HCCI was formed because a better understanding of health spending can improve the quality of care and save money. If we generate information that makes a difference, then we will be a success,” Gaynor says.

Also, consultant Joanna Relth makes it known on the Healthcare Talent Transformation blog that she is no fan of ICD-10. “I’m sure that the intent of making this massive change to the codes is to improve the accuracy of diagnosis coding so providers will bill more accurately and insurance companies will pay providers and insureds in a more timely fashion. Seriously?? Did anyone ask a learning professional about how large a list is reasonable and at what point does the number of data points become impossible to follow?” she wonders in what comes off a little as an anti-government screed.

I knew my dad was not alone in experiencing poor hospital care. Thousands of people are harmed in hospitals every week. Yet, some politicians and pundits still insist America has the “best healthcare in the world.”

Just this morning, NPR helped dispel this myth with a report on the myriad problems with U.S. healthcare—including the quality problem. Read and listen here. And share with your friends both inside and outside the healthcare industry. Share my dad’s story. Share your own stories. Let’s make this priority No. 1. Too many people die and suffer unnecessarily in this country.

Free Healthcare IT Newsletter Want to receive the latest news on EMR, Meaningful Use,
ARRA and Healthcare IT sent straight to your email? Get all the latest Health IT updates from Neil Versel for FREE!

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